You are in hospital: Who advocates for you if you can't?
A patient is admitted to hospital. She rings her daughter at home: things are not good; she is feeling awful, her heart is racing, she is shivering and her urine is dark and down to a brown trickle. Every time she stands up she feels faint. This is not the first time this has happened. She has had similar symptoms several times before. She has a chronic illness that makes her more prone to infections but she usually recovers quickly after fluids and antibiotics. Except that this time she has not received either. She explains her problems to her nurses and doctors. They ask her to wait. She is getting nervous. She rings her daughter. She is rapidly getting worse. The daughter tries to get hold of the consultant. The consultant is unable to come to the phone. The daughter speaks to a friend and the friend e-mails me with the story: Have I got any idea what else to do? I don't know anybody at that particular hospital. Is has a good reputation but things don't sound right for this particular patient. As so often the underlying problem is a power-gradient: The patient and her daughter know what needs to usually happen but have not got the professional authority or organisational leverage to make themselves heard and get things moving forward.
What would you do?
There could be a few options:
Go into the hospital and insist on speaking to someone? Not everybody feels able to do this while mum is still in hospital and under COVID-19 regulations it is impossible.
Post it on twitter to the national patient safety team? Most hospitals have got a comms department that watches keenly what is happening on social media but is an aggressive act and will burn most bridges with the clinical team.
Ring the chief-executive? It might be difficult to get through but that might be a highly effective intervention if successful.
Put in a complaint? It could easily take days or weeks to get a reply - not helpful if things are deteriorating rapidly as in this particular situation.
Launch a law-suit for clinical negligence? When things go wrong this is sometimes the only way to gain the insights that are needed, but is a law suit takes a long time. Not an emergency solution.
Ring the Critical Care Outreach team? That is not as outlandish as it might seem. Call-4-Concern is a service that the Royal Berkshire Hospital is Reading is operating. Highly experienced nurses will answer calls from patients or relatives from the general wards and more often than not they are able to assist. This type of system is now recognised in international guidelines as a quality indicator of a patient-centred service for critically ill patient. Only a handful of UK hospitals are currently offering this type of expertise.
Hire a Health Advocate: this is a profession that assists in Canada with the communication between patients and healthcare providers for complex systems. Not a common service in the UK.
While this type of problem is not uncommon a simple solution is not always easy to find. Much will depend on who has the best perspective of the problem? Who is able to give impartial support? Who can give independent advice?
For most problems in life there seems to be a charity that you can contact? Charities are independent and provide support guided by their ethical principles. There are a lot of medical charities, most support patients with specific conditions and circumstances such as the British Lung Foundation, Age Concern or Mind. They are doing amazing work and are immensely trusted by the public. There are indeed charities focusing on learning for patient safety and justice after medical accidents.
Should there be a charity for patients and their families to offer advice and advocacy if things are complicated or going wrong as well as offering moral support and medical knowledge with organisational leverage? On the spot? While things are difficult? How would such an organisation operate? How would it work if time is of the essence? What would be the advantage over and above current systems?
This is one of the topics that we are hoping to discuss at our 3rd Symposium on Patient Powered Safety the 21st of May 2021. Interested?